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Immunity, Immunity, Where Art Thou?!

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I walked into the lab again, as I scanned all the familar faces, I saw him! My favorite guy. The one that gets that sneaky, rolly polly vein of mine. Except, this time, I was in for disappointment. It took two tries and a little wiggling to find it. Oh the heartbreak… and the pain. Oh well, I told him I wouldn’t break up with him, he is still my favorite vampire.

This would be the second time in a week that I was in the lab. Last Thursday my labs came back with a very low white blood cell count. An unfortunate side effect of the anti-rejection medications.  It should get better with some time. My WBC was 1.4, at the VERY least it should be 3, some hospitals want you hospitalized at 1.5-2. However, UCSF isn’t one of those hospitals. I had to go get retested this week, it came back low again. It was still only 1.5…  The doctor told me NOT to leave the house. Can you believe that? I’m on house arrest and I didn’t even get to steal an awesome car! Doctors, I think as little kids wanted to grow up and be cops. House arrest…

Now having a WBC of 1.5 means I get Neupogen injections. They are injections that stimulate your bone marrow to produce more WBC’s. Another trip to the pharmacy. Where I get to pick up needles, my favorite things! Then, per my coordinators directions, I have to find a “roll” (her words not mine!) I told her, “Rolls! I don’t have ANY rolls”. She’s never seen me so she didn’t know if she should take me serious or not. It was one of those funny awkward moments. Of course, I was joking, doesn’t every american have some jelly rolls somewhere or another! God bless the USA…

All joking aside, I am not looking forward to this. I have to take claritin and tylenol to help with the side effects. Likely side effects include a fever of up to 102-103, headache and bone pain and more. Some of the more “serious” side effects include paralysis and spleen rupture but hey… it gets my white count up! I don’t understand medicine, it seems crazy to me to take this. I guess it is quite dangerous though for me to have such a low immunity. Transplant patients can and have died from catching a common cold because they have no immunity to fight it. So, I’m praying my white count comes up fast! I’d like to get on with my life.

I also have a bit of good news, for a few days it was a question if I had CMV, a dangerous virus for transplant patients that can take months to get over. If my results came back positive I could have been hospitalized. I am so thankful God answered our prayers as it came back negative.

Not this past week but the two prior to that I’d been feeling awesome. I was out running around like a chicken with its head cut off. I had so much energy! Then, wam bam thank you mam, I lost it. The last week I’ve been laying around the house looking for that energy. I think it ran away with my white blood cells. If you see either, please tell them to come back, I quite enjoyed being a headless chicken.

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Dentist!?!

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I had my first dental appointment since my transplants. UCSF asks that you not have any dental work done for at least 6 months after your transplant but I begged because I didn’t want to miss out on this years benefits/coverage. I know, who begs to have dental work done! I have a lot that needs to be done though because I also have Lyme disease which destroys your teeth regardlessly of how well you take care of them.

In the past I haven’t been able to get numb at the dentist or best case scenario the numbness would last 30 seconds and then I would need another shot. I was of course terrified to go again this time because of the insanely barbaric memories I have of sobbing shaking while my teeth would get drilled on with no numbness (this includes not being numb for root canal). Nobody could go with me this time, it was me myself and I…. Well, Coleman was able to stop by for 5 minutes before he had to go to work and give me a hug and kiss. He is so sweet.

I told the dentist that I was confident that all it took was a new liver in order for me to get numb. And with that, the numbing shots began. He started with his best stuff, no playing around with little old lidocaine.

You know what? It was a lot better this time! It only took 4 shots and one during the middle to fill 2 cavities! I also had a bunch of people praying for me. It is my New Years miracle.

I understand why they don’t want you to have dental work though until 6 months out. It kicked my butt! I’m so tired! They also put you on antibiotics for a week before so you don’t get an infection. My mouth is still very sore for some reason.

I’m glad to have that done and over with! Now on to a New Year!!

A Little Rest

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Finally, with the pain killers, the pain has been controlled! I have been feeling much better. Also, the pain of the broken ribs has been decreasing. I have been needing less pain killers, I even went 16 hours without one and was ok. So I am very thankful for that.

However, I don’t know if it is the new pain killers, my body healing or the increase in prograf (my anti-rejection med, I am on a pretty high dosage)… but I have been sleeping all day and all night! I never sleep during the day and never at the drop of a hat. I’ve been falling asleep mid-sentence. Extreme fatigue. However, the sleep has been wonderful. Very relaxing and probably much needed since I really haven’t slept much since the transplant. I have also been having numb/tingling feeling all over my body and I am almost certain that is from the prograf.

The other MAJOR side effect I am dealing with, whether it be just post-surgery complication, pain killer or prograf I do not know. I can’t eat. I mean my appetite is totally gone! Absolutely nothing sounds good to me. I am lucky if I get in a few hundred calories. My parents and I are working on this but it is hard. And then I take pills on empty stomach and get nauseous and well, it is a vicious cycle. Oh well… this too shall pass.

I looked in the mirror again yesterday… bright blue eyes. This still amazes me and makes me happy. I do not miss having yellow eyes!! They are bright white and oh so healthy. It is like seeing into the future almost or a prediction of the future… bright and healthy. =)

I can’t believe it has been 6 weeks almost since the transplant! Kelly is doing great, she just still needs her daily cat naps in the afternoon. I miss being able to go outside without having to worry about the sun. They say 80-100% of people (I’ve heard both statistics) get skin cancer 15-20 years post transplant, I HAVE to wear sunscreen every day. If you know me, that is a foreign concept and putting it on everyday is just weird for me. The things we have to get used to…

My sister and her kiddos are staying this coming week with us. That means I get lots of time holding my new little niece (3 months old) and playing with my cute nephews. Well, when I am not snoozing!

Other good news: This is the first week since I have been home that I have gone an entire week without calling the UCSF emergency line. I didn’t have any need to. =)

Picture of Pain

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I had my UCSF clinic appointment today. My doctor was finally someone that I knew…. Dr. Kang! He was the surgeon who let me know they had found a liver donor for me. He was one of the main surgeons on my transplant team. So thank you to those who prayed that I would get a nice doctor today.

I brought the CT scan (on disk) with me that was taken at Kaiser ER on Friday. He showed it to me in 3D, it was amazing!! My liver goes almost touches my heart it is so big! I had an air bubble in my chest, he told me someone needed to burp me hahah….

He said there was a little fluid near my lungs but that was normal and that I do not have pleural effusion, as Kaiser had led me to believe. He also said that this amount of pain couldn’t be caused by a pleural effusion anyway. Other than that he said it looked like a perfect scan and he showed me where everything was. It was pretty amazing. Technology these days… to be looking at a screen that has a picture of the organs that beat, filter and keep you alive, every single second of every day. What a miracle. God sure outdid Himself when he made us huh!

He did an exam and said that it looks like my ribs are fractured from the transplants. During surgery they pull apart your ribs with a rib spreader. I had two surgeries and was on the table, ribs spread for a combined total of 20 hours. You may or may not recall but I have had major issues with my ribs in the last year or so, they are very brittle and easily wounded. So this doesn’t come as a surprise to me. And it explains why I have pain in so many different areas.

You can read my previous post regarding my rib problems here: Slipping Ribs Post

I am thankful that it is not some chronic issue, or problems with rejection, or any other thing that could go wrong (there is a lot…) So, granted fractured ribs does suck, but they will heal without causing problems to anything else.

Also, because Dr. Kang really understood how much pain I was in (thankfully a doctor that got it!), he gave me serious pain killers. Haha, as if dilaudid isn’t serious enough. He told me to increase it to as often as I need and upped the dosage AND gave me Norco to take with it. Granted I feel weird taking so many drugs… but it does help the pain! Praise God! However, these knock me OUT! Like night night sleep tight Kortni! They knock me out like I was in the hospital, falling asleep mid-sentence (or mid-type). Forgive me if my post doesn’t make sense or I have errors.

So that was the “good” news. The bad news is that my TAC level (anti-rejection med) was, yet AGAIN, a little too low for their liking. He increased it from 6mg twice a day to 8mg twice a day!!! I was released at 3mg. An 8mg dosage is on the high scale when it comes to prograf (the anti-rejection medicine, the lab for it is just called TAC level). It is already causing me some serious side-effects (or seriously embarrassing haha), none of which I plan to discuss here, in a somewhat public eye… The doctor said it is much better to increase it now then to go into rejection and then be on insanely high doses of anti-rejection meds. I guess he has a point!

Another side-effect that has been getting worse is my lack of appetite. Nothing has a taste. I walk down the candy isle and nothing looks good. The smell of meat repulses me. They say this will get better after a few months (they say that about almost everything… 6 months… 1 year.. just keep holding on…). It better improve because my honey and I are foodies! Nice restaurants, cheese plates, good chocolate… yumm! I just have to pull him away from his 4, yes 4, jobs! Crazy, busy guy! I am proud of him though!

Oh! The secret book giver has been revealed. It turns out my Auntie Sue gave me the Julie Klassen book. AND she said she has a bunch of them! Oh happy day! She said she has crates of them and a bunch of Julie Klassen books too that I can borrow anytime (she is my next-door neighbor too!). That totally made my day to find out who gave it to me and that she has more! So… Thank you Auntie Sue!!! I love you!

Yet again, have I mentioned how awesome my family is!

Superwoman? Perhaps.

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I haven’t posted in a few days because I felt like I was only posting about having a great day and then the next about how much pain I am had been in. I guess it was really bothering me more than anything and I didn’t want to face these ups and downs. And then my bad days turned into worse and worse… until I ended up at ER last night.

I posted on Tuesday how my hematoma was bothering me. Well, I guess I didn’t really let on how much it was bothering me because I wanted to focus on the fact that my stomach pain had improved… well it was replaced with horrible hematoma pain all day Wednesday and through Thursday morning. That pain started to dissipate Thursday and I developed a new pain, at the very bottom of my liver, in my back (which we thought was kidney pain because of its location). This pain was awful. I cried all day Thursday and on Friday at 1pm, it had got to the point where I was at a pain level equal to when I woke up from my 2nd transplant. Time for ER.

Now, during this time… did I allow myself to increase my pain meds? No. Why? Because certain people, especially the doctors, are so anti pain meds that I was terrified. They put so much fear into you that you will become addicted and you practically have to beg them to give you something. For someone who hates being on pain meds, this is difficult for me. I would love nothing more than to be off the pain killers and to be improving, slow recovery is not fun, but recover I will, whether it be slow or fast, I will get there! Anyways, so the pain was awful, and we went to ER….

It was quite the eventful trip down, we came upon a head-on collision, that was scary. We called 911 and had to continue on because I was in such horrible pain. Walking, breathing, driving, stopping, going, bumps…everything hurt! (By the way, everyone seemed to be somewhat ok and we called 911).

My ER doctor was great. I will make a long story short… they gave me IV dilaudid for the pain. That was the first time I had any real pain relief since my transplant. I cried because I was so relieved to have the edge off of the pain (though it did still hurt) for the first time. The doctor ran labs and did a CT with contrast (looking for kidney stones or something wrong with the liver). CT scan came back showing that I have pleural effusion, which is fluid between my lungs and liver. My ER doctor called a UCSF liver transplant surgeon to see what they wanted to do with me… he said to send me home (even though the pleural effusion doesn’t explain why I was in such severe pain). I was sent home, with no explanation (possibly the pleural effusion but nobody knows for sure). Granted, my ER doctor was awesome and very caring. He told me that it was absolutely necessary to increase my pain pills. Without pain control, I can’t breathe deep which may have caused the fluid between my lungs/liver and I can’t walk because it sends shooting pain to, well to where ever my pain decides to camp out for the day… so I have been taking my pain pills every 4 hours today.

And now guess what… oh yes, the pain has decided to move again. I apparently have migrating pain every single day! But severe, level 8-9 pain. It is now in my shoulder. Every time I get up from a chair, sit down, lean back, reach with my right arm… I have shooting pain that makes me yelp. I kind of sound like a sad puppy.

The doctor also reinforced that I need to breathe deep, and walk, walk, walk! Did I know these things? Yes. Is the pain too severe to do them? Yes! Do I have to do them anyways? Yep…

Even though I had severe pain today, I decided to go with my mom downtown. We went grocery shopping. I held my shoulders back (ouch!), took deep breaths (ouch!), and with every step I took tried not to cringe at the pain shooting through my body… But you know what, I did it. I also used my inspirometer for 30 minutes straight (breathing machine). I had always wondered how to increase your pain threshold. Well, now I know, increase your pain!

I looked up the side-effects today of prograf, they included: pleural effusion, severe back pain, excessive dry skin and multiple other symptoms that I have been having. This is probably because I am on a fairly high dose of prograf… I hope I can decrease it soon or change to a different kind of anti-rejection med.

So although this isn’t the happiest post, trust me, both you and I want it to be, I thought I would let everyone know what is going on…. Prayers greatly appreciated!!

Moral of the story: Sometimes the only way to get through the pain is to face it head on with God by your side. It is then that you learn, grow and can finally heal.

PS. In case you are wondering, my sister is doing great. She still gets tired but she is off her pain killers (lucky duck!) and I couldn’t be happier for my hero sissy! She has driven and gone grocery shopping by herself, made a trip to Reno and saw my oldest sister who recently moved there with my 2 nephews and sweet niece…. She still gets tired and will take long naps on some days, but that is expected as she grows that awesome liver of hers! I love you Kell!

Oh and….

Happy One month (and one day) liverversary my awesome liver! It is doing great, labs are always perfect in the liver arena….

Long day @ UCSF

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Yesterday my transplant coordinator called and said that she was concerned about how much pain I have been having. She said that she wanted me to go to the clinic tomorrow (Tuesday mornings the liver transplant clinic is specifically for post-transplant liver patients and every week it varies which doctors work the clinic, and which doctor you will see). I called my coordinator back yesterday evening and told her I was doing a bit better and we agreed that if I was indeed better this morning, I wouldn’t go and if I was worse, then I would go ahead and come to my clinic appointment.

Well last night, after About 10 minutes of laying in bed, I was in tears. It takes a lot to make me cry these days because I now know what real pain is. I had to pull a roly poly move to get out of bed. Coleman tells me that I am a roly poly because when I am in pain, I curl up in a ball and when I need to get out of bed I have to rock back and forth and roll side to side. It’s awesome.

So, after 10 minutes I had to leave my beloved bed and move to the chair to sleep (which is where I have ended up the last 3 nights from pain preventing me from sleeping). I still didn’t sleep well in the chair and when I woke up with the sun this morning, I knew I needed to keep my appointment… or go to ER! The pain was intense. Think of lemmings starting a massive inferno in your stomach because that is exactly what my stomach felt like, constantly. At least if I kept the appointment, they would know what to do with me properly as UCSF is familiar with transplants, where as Kaiser, well not so much.

After my appointment with the doctor, he asked that I go get an ultrasound. At this point the pain was so bad that Coleman had to get me a wheelchair because I could barely walk. The ultrasound showed that I have a small hematoma on the edge of my liver. They weren’t too concerned about it and said that it’s common and should reabsorb on it’s own. Thankfully the other hematoma (blood clot) that was on my incision 2 days ago had disappeared by today. So no worries there. My arteries in my liver are flowing perfectly. I also got to see my new liver for the first time. Boy, oh boy! Literally… it is a big boy sized liver. =) That must be why it is working so well, mr gigantor blood filter. Then, we had to wait again and have a 2nd ultrasound done by the radiologist (not the tech). Then we had to wait for my doctor to call us to tell us we could go home or if we were going to be admitted… Talk about hurry up and wait… which is not any fun when you have a pain level of 8! We were there for 4-5 hours!

They did give us the OK to go home though. They gave me some suggestions for the pain and also decreased my cellcept (one of my antirejection meds) that can have side-effects of stomach issues. I hope these suggestions will help and the pain will subside sooner than later! Sorry for such a boring post…. it was kind of a blah day, even the weather was overcast. On the bright side, the doctor said I can take baths now, that my incision has healed up nicely! There is only one spot that still has a scab on it!

Dear Summer,
Please come back! I miss you and the smiling sunshine.
Thanks,
Your biggest fan

I hope had a terrific Tuesday!

Happy Day!

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Last night I decided I really didn’t want to go on antibiotics unless it was absolutely necessary (for my kidney infection). I took a bunch of colloidal silver, which is what they used back in the day as an antibiotic, but without any negative side effects. Then I went to see a wonderful woman/friend/health practitioner, Deanna, she has a biofeedback machine and worked on my kidneys, which were functioning at 0%!! She said that they did have an infection. By the time I left she had them functioning at 95%!! I’ve continued the silver as well and today I have no signs of kidney infection! I will still go get checked in a few days and go to the lab to see if I still have one but I’m pretty sure it will be negative.

PRAISE GOD! I hate being in horrible pain. She also treated my endocrine/thyroid (which were functioning extremely extremely low, which is kind of normal in liver disease) and I have so much more energy today! I just have to be sure not to overdo it.

Bless the LORD, O my soul, and forget not all His benefits:
Who forgives all your iniquities, who heals all your diseases,
Who redeems your life from destruction, Who crowns you with lovingkindness and tender mercies,
Who satisfies your mouth with good things, so that your youth is renewed like the eagle’s.
Psalm 103:2-5